Breast Cancer Now Forum

Hello sorry I haven't replied until now but have been rather busy the funeral for Liz will be at the Wessex vale crem bubb lane eastleigh hants SO30 2HH at 1pm on Friday 16th may all welcome take care god bless nick ... View more

Hi it is with sad heart and deep sorrow I have to tell you that the love of my life nanniespiky/Liz passed away peacefully on Monday morn I would like to personally thank you for your support and friendship to her over the years I know she loved the meet ups take care all of you god bless nick ... View more

Difficult question for anyone to answer as everyone's case is different and only your oncology team will have the best answers. As stated in my earlier posting on here, I have had it all and, through choice, would have just had gamma knife but, for me, to have the best possible chance of living longer I was advised to have WBRT which appears to have had a good result for me. Unfortunately, I am having problems with nausea and sickness which can be a side effect of WBRT but my medical team are working hard to eradicate this. With regard to lap/cap combo I have been told that I have reached the end of the road with this, but it gave me good results for a year although others, I know, have been on it a lot longer. Take advice from your medical team, they have your best interests at heart and will advise you accordingly. Yes, I do wish I could have just had the gamma knife but I'm happy knowing I've given myself the best possible outlook. Hope this helps you. Take care. Liz x ... View more

Hi ladies Well, I think I am slowly returning back to the land of living, but I'm not quite there yet. After having spent a week in our local hospice, lovely place, trying to get the nausea under control,I thought we had managed it, but oh no!, the sickness and nausea is causing me real grief and between my doctor, onc,community nurses and McMillan nurse they are all still trying to find the right combination of drugs to deal with it as best as possible. Due to the WBRT it may never be completely eradicated, but it won't be for lack of trying by my medical team. Saw onc today and she has set the ball rolling for me to have rads to nodes in neck and chest done. So much so that when I arrived home from hospital there was a call from the rads department to say that my onc had been to see them and could I go in for planning tomorrow afternoon! I will need to have another face mask made as I did with the WBRT, but at least I will know what to expect this time. I can only hope that I will be able to tolerate another 5 sessions of rads. I hope to be well enough to join you on Friday but I can only see how I am on the actual day. Jacqui, glad you were able to come to a decision about your skull mets and that you are still keeping well. Hope every one else is keeping ok. Take care. Liz x ... View more

Hi Wensteed In the last 3 months I have had gamma knife, brain surgery and 10 sessions of WBRT. Out of the three I, personally, would opt for gamma even with the discomfort of having the frame screwed to your head. It is certainly the least invasive of the treatments with minimal side effects. I had 3 brain mets and fought for funding for many months but was constantly refused and it was only when I had a seizure and they discovered by ct scan that the mets had grown that funding was granted. Sadly, when I went to the Cromwell for this, one met had grown too big but they were able to blast the other two. Being a rather positive and strong person, I handle my treatments well but, I have to admit, that after the op and WBRT I am finding recovery quite hard and have realised that it is going to take more time for the side effects to diminish than expected. Push for stereo radio but also ask about Capecitabine/Lapatanib combo which kept my brain mets stable for 8 months and it worked well on my liver mets. Hope this helps and good luck. Liz x ... View more

Hi Olives I think I might be the lady Nicky is talking about as we have met through this forum and meet for a cuppa and chat. I was diagnosed with brain mets March 2013 and put on Lapatanib/Capecitabine combo which shrunk the brain mets for a while. In the meantime, I was constantly battling for funding for stereotactic radio but having no joy. As I was feeling quite well I did not want WBRT which was being offered to me. In October I suffered a full blown seizure and was hospitalised with the scan showing that the mets had grown and the largest was now 2.5cm. As a result of this I was granted Gamma Knife which was carried out at the Cromwell Hospital in London. Sadly, the larger met had grown too big in volume for this treatment but the other two mets were blasted successfully. In December I had the tumour removed by operation but even though the surgeon was pretty confident all the tumour had been removed, he couldn't guarantee a recurrence and advised WBRT which I had 10 sessions of in January. I am recovering slowly from it all as it's been a hectic 3 months but my onc has faith in me and is keeping me on the lap/cape combo as it seems to be working elsewhere in the body and I am also regularly monitored with ct scans. Yes, brain mets are scary but not as bad as it used to be and I often meet with a lady in our hospital who had WBRT 2 years ago and she is still doing ok, which gives me a lot of hope. If you just have the one brain met, then ask your onc about Lap/Cape combo and push for stereotactic radio as it really is a good treatment and nowhere near as invasive as the other options. Good luck. Liz x ... View more

I feel that the main problem with BC is the fact that stage 4 BC is kept 'hush hush' whilst so much is made aware of the mounting success of survival rates with primary BC. Whilst this is wonderful for those women who are able to 'beat' this disease, it still feels like a kick in the gut for us secondary ladies to hear the phrase "I wish I had breast cancer" knowing that our life has been shortened considerably and that there is still so much ignorance regarding metastatic cancer. Do I envy Ms stunt because she has survived pancreatic cancer? Well, yes in a way I do as I sit here with a bald head covered in a horrible rash from WBRT and a scar running from the top of my head to the base where they cut my brain tumour out and wondering if I'm going to be one of the 12,000 statistics this year. Positively speaking, I won't be but, hey, it's only breast cancer Ms Stunt so what am I getting worked up about. Maybe I could sit beside you with my bald spotty head on a Tv interview and you could tell me how lucky I am! Having survived malignant melanoma 9 years ago, seeing family members die of different cancers and now living with secondary breast cancer, I wouldn't wish any type of cancer on anybody as cancer is the pits whichever form you get it and PCA should withdraw this campaign with immediate effect. Liz x ... View more

Wonderful news Nicky. You certainly deserve it after all you've been through lately but you are always so cheerful and chatty at our meet ups. Look forward to hearing about your holiday over our next cuppa and chat. Liz x ... View more

Hi Stephie I have four nodes in my neck which have been there for about a year and my onc always checks my neck to see if there is progression. My last scan showed that the biggest node was 8mm so relatively small although I do look like a hamster somedays because of the fluid that seems to rest there but that could be down to the steroids that I am on at the moment as I've just finished WBRT. I am currently on cape/lap combo which seems to be holding things but my onc has advised me that if the nodes start troubling me then they can be zapped with radio. Has that suggestion be put to you? If not, then it could be something for you to discuss at your next appt. Take care. Liz x ... View more

Thank you Danny for letting us know about Anne. I will remember her as a lovely , elegant lady sitting next to me in M&S talking about life in general. It was such a shame that she never made another meet up but we would often wonder how she was getting on and it was lovely when you posted on the forum keeping us informed. Yet again, another gem taken too soon. She will be in our thoughts on Friday. Liz x ... View more

Hi Jacqui and all Didn't see the double rainbow but it must have been shining over me as I had good scan results yesterday. Liver and bones are clear and The nodes in my neck are holding. The only small blip is a node in the middle of my chest but, when I have finished my WBRT then I will have 5 radio sessions to zap it as onc wants to nip it in the bud before it causes problems. Onc was really happy and gave me the news with a lovely smile and said things are looking ok for now. My WBRT is going ok - just two sessions left now and the fatigue is not too bad at present. Feel a bit like Hannibal with the mask but it's not too unpleasant. Glad you have had the fluid drained now Jacqui - guess you'll be running round Winchester next Friday. Hope all other ladies are coping with their treatments and look forward to seeing you all on Friday as I do enjoy our meet ups with our free-for-all and no holds barred chats. Take care. Liz x ... View more

Hi ladies Just wanted to echo the sentiments of everyone on here and say how much I enjoy our meet ups and even though we have come together in quite a tragic way, we all seem to deal with it in a very open and honest way within our group which seems to be so refreshing and therapeutic for all of us. Unfortunately, after recovering well from my brain op, I got hit with a chest infection and ended up on antibiotics. I am slowly getting over it now but it has knocked me down a bit. I also go for my mask fitting on 2 Jan and my WBRT starts on 8 Jan for 10 sessions so I hope to make the Jan meeting albeit with a different hair attire either known as 'wiggy' or 'bandana' - we shall see on the day. I shall save a fortune on hair products! Anyway, hope everyone else is coping with their ongoing treatments and that you all have a lovely Christmas and I sincerely hope that 2014 will be a kind year for all of you,my forum friends. Take care Liz x ... View more

Hi ladies Thank you so much for your good wishes- means a lot. I am recovering well from op and had staples taken out today,29 in total, but it is a very neat scar and should sleep easier tonight. I am struggling with my vision so hope thi e- mail makes sense as the letters are blurring into each other but maybe this is due to the swelling and will settle in time. Anyway, I am very hopeful that I shall be there Friday and it will be lovely to catch up with you all. Kirstie - sorry to hear that things have not been too good for you but hope you are coping ok and it would be lovely to see you again. Valia- would also be good to see you if you are feeling ok but I know that you just have to go day by day with the chemo - hope Friday will be a good day and you make it. To all the other healthy(!) ladies, take care. Liz x ... View more

Hi Ladies Latest update is I have recovered well from SRS but I am now going into hospital tomorrow for operation to remove brain met that was too big for SRS. I am starting to feel scared now as I really didn't want to go down this road but life isn't dealing me a good hand at the moment. Afterwards I will be having 10 sessions of WBR as there is a high risk of recurrence due to the fact that the tumour has grown a lot in the last couple of months and this will give me the best possible chance. After getting the funding forSRS I never thought I would be in this situation but I am and now have to hope that this journey is not going to get too rocky for me but I know it's going to be a tough one. If I am well enough I hope to be there on the 13th but I will probably post and let you know how things are before then. Please say a prayer for me and hold my hand. Liz x ... View more

What a beautiful and touching tribute to Marilyn, the Xeloda Queen who has given us all such hope and strength in the world of living with cancer. Thank you Di for sharing this with us. Liz x ... View more

Hi all Will miss meeting with you on Friday but will be having my denosumab injection at the hospital so hope to make the next meeting. Off to the Cromwell hospital in London tomorrow for the next three days to have gamma knife treatment for my brain mets. Can't believe the funding has been granted and things have happened so quickly although I think the fact that I had a full blown seizure a couple of weeks ago has moved things along a bit. Not looking forward to having the frame fitted to my head but I know that this is the best treatment for me to have especially when everything else is stable at present. I am sure that I can overcome 15 minutes of pain! Will report back at a later date with, hopefully, a pain free head. Best wishes to everyone else and hope you are all coping with your various treatments and results. Liz x ... View more

Hi Jacqui Pleased that you have been able to reach a decision as I know you were thinking about it the last time we met. It is good that your doctor has signed the form for you to give you some financial security but I know that it comes with mixed blessings. Even though we understand and accept our illness it is always hard to see it written on that sheet of paper in black and white and I know how I felt when my onc completed the DS1500 form for me. Let yourself go through the emotions this decision brings and, gradually, you will find yourself enjoying and embracing the free time that you now have. I know that my days are always full, the time goes by quickly and I enjoy being a lady who lunches! If you want to meet and have a chat about this before our November get together then give me a call. Take care. Liz x ... View more

Hi Angelfalls I was also refused my denosumab inj a couple of months ago due to a mouth ulcer in the roof of my mouth which I've had since May along with a sensitive tooth and jaw. I immediately phoned my dentist and explained the situation to him and he gave me an emergency appt for the next day. Had two x-rays done which showed no abscess,holes or any other problems. Dentist unsure if little crater in my mouth is ulcer but without a biopsy being done cannot give me any answers but will live with this little problem rather than have a biopsy. However, because I was able to show copies of the x-rays to my onc and state that there was no problem, she was happy to let me continue with the injections. Maybe a visit to the dentist may help you and give you the answers you need to give your onc for your injections to continue. Good luck. Liz x ... View more

Hi just wanted to send my best wishes to those going through worrying times at the moment, including myself! Had a full blown seizure whilst eating my dinner Monday night but, fortunately, Nick saw it starting and was able to prevent me falling onto the floor and doing further damage. It was more frightening for him as I have no recollection of the fit and the minutes that followed it. When I regained consciousness, there was a rather dishy paramedic dealing with me (small consolation!) and I gave him some very vague answers. Kept in hospital overnight and given ct scan which showed no change from the last one, thank goodness, as I was scared that further brain mets had developed. They think it may have been the fluid that caused the fit so have now upped my steroid dose and been given an anti convulsants drug to take. Back home now but feeling rather achy, probably result of thrashing around during fit. Enough excitement for me - good luck to everyone else undergoing tests and hope we can get together soon. Liz x ... View more